Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Seek emergency help for severe breathing difficulty, blue or gray lips, prolonged pauses in breathing, sudden inability to wake normally, a seizure lasting several minutes, or sudden weakness or loss of movement.
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Arrange prompt medical review for:
Increasing snoring, choking during sleep, or daytime sleepiness
New hand weakness, numbness, pain, or frequent dropping of objects
New balance problems, falls, neck pain, or loss of bladder control
Difficulty swallowing, repeated choking, or recurrent chest infections
Fainting, chest discomfort, reduced stamina, or a racing heartbeat
Persistent headache, vomiting, or an unexplained change in alertness
3
Does any of this apply?
Book an appointment
Routine follow-up is important even when symptoms seem stable.
Contact the usual care team if there is a new decline in hearing, walking, hand strength, sleep, swallowing, behavior, development, or ability to manage daily activities.
Before any planned operation, dental procedure with sedation, or scan requiring anesthesia, make sure the team knows about Hunter syndrome.
This is a safety-planning issue, even if the procedure seems minor.
Every sign above is quoted from the sofidex article on Hunter syndrome. If you are not sure, err upward — it is always reasonable to be checked.